scholarly journals Quality of Life as an Indicator for Care Delivery in Clinical Oncology Using FHIR

2021 ◽  
Author(s):  
Chantal N.L. Beutter ◽  
Jan Ross ◽  
Patrick Werner ◽  
Dilyana Vladimirova ◽  
Uwe M. Martens ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Care Delivery ◽  
Well Being ◽  
Control Element ◽  
Waiting Room ◽  
Related Quality ◽  
First Results ◽  
Health Related ◽  
The Individual

Introduction: Health-related quality of life (HR-QoL) as a parameter for patient well-being is becoming increasingly important.[1] Nevertheless, it is mainly used as an endpoint in studies rather than as an indicator for adjustments in therapy. In this paper we will present an approach to gradually integrate quality of life (QoL) as a control element into the care delivery of oncology. Concept: Acceptance, usability, interoperability and data protection were identified and integrated as key indicators for the development. As an initial approach, a questionnaire tool was developed to provide patients a simplified answering of questionnaires and physicians a clearer presentation of the results. Implementation: As communication standard HL7 FHIR was used and known security concepts like OpenID Concept were integrated. In a usability study, first results were achieved by asking patients in the waiting room to answer a questionnaire, which will be discussed with the physician in the appointment. This study was conducted in 2019 at theSLK Clinics Heilbronn and achieved 86% participation of all respondents with an average age of 67 years. Discussion: Although the evaluation study could prove positive results in usability and acceptance, it is necessary to aim for longitudinal surveys in order to include QoL as a control element in the therapy. However, a longitudinal survey through questionnaires leads to decreasing compliance and increasing response bias. [2] For this reason, the concept needs to be expanded. With sensors a continuous monitoring can be carried out and the data can be mapped to the individual, interpreted by machine learning. Conclusion: Questionnaires are a concept that has been successfully applied in studies for years. However, since care delivery poses different challenges, the integration of new concepts is inevitable. The authors are currently working on an extension of the use of questionnaires with patient generated data through sensors.

scholarly journals Health-related quality of life after Gamma Knife radiosurgery in patients with 1–10 brain metastases

2020 ◽  
Author(s):  
Eline Verhaak ◽  
Wietske C. M. Schimmel ◽  
Karin Gehring ◽  
Wilco H. M. Emons ◽  
Patrick E. J. Hanssens ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Gamma Knife Radiosurgery ◽  
Well Being ◽  
Health Related Quality ◽  
Patient Level ◽  
Related Quality ◽  
Health Related ◽  
The Individual ◽  
Over Time

Abstract Purpose Increasingly more patients with multiple (> 4) brain metastases (BM) are being treated with stereotactic radiosurgery (SRS). Preserving patients’ health-related quality of life (HRQoL) is an important treatment goal. The aim of this study was to assess (individual) changes in HRQoL in patients with 1–10 BM over time. Methods A total of 92 patients were assessed before (n = 92) and at 3 (n = 66), 6 (n = 53), and 9 (n = 41) months after Gamma Knife radiosurgery (GKRS), using the Functional Assessment of Cancer Therapy-Brain (FACT-Br). The course of HRQoL was analyzed using linear mixed models. Clinical minimally important differences were used to evaluate individual changes. Results At group level, patients’ physical well-being worsened, whereas emotional well-being improved over 9 months. Scores on other HRQoL subscales did not change significantly. Number (1–3 versus 4–10) and volume (small, medium, and large) of BM did not influence HRQoL over time, except for the subscale additional concerns; medium intracranial tumor volume was associated with less additional concerns. On the individual level as well, physical well-being declined while emotional well-being improved in most patients over 9 months after GKRS. At patient level, however, most patients had both declines as well as improvements in the different HRQoL aspects. Conclusion Our results indicate that even in patients with up to 10 BM, both at group and individual subscale level, aspects of HRQoL remained stable over nine months after GKRS, except for an improvement in emotional well-being and a decline in physical well-being. Nevertheless, HRQoL scores varied considerably at the individual patient level. Trail registration number ClinicalTrials.gov Identifier: NCT02953756, November 3, 2016.

Effects of MyBFF@school Intervention in Health-related Quality of Life among Overweight and Obese Primary School Children

2019 ◽  
Author(s):  
Zahari Ishak ◽  
Suet Fin Low ◽  
Wan Abdul Hakim Wan Ibrahim ◽  
Abqariyah Yahya ◽  
Fuziah Md. Zain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary School ◽  
School Children ◽  
Well Being ◽  
School Functioning ◽  
Primary School Children ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

<p>Obesity has been shown to impact the health-related quality of life (HRQOL) among children. This study aimed to determine the effectiveness of MyBFF@school program on HRQOL among overweight and obese primary school children in Malaysia. KINDL<sup>R</sup> Questionnaire was used to collect data on their HRQOL before and after the program. ANCOVA was used to analyse the comparison between intervention and control group after 6 months. There are significant effect on family functioning, F(2,1103)=7.452, p<0.05 and school functioning, F(1,1117)=7.103, p<0.05 after the intervention. Effects can also be seen on physical well-being, emotional well-being and friends functioning. The program is effective in improving the HRQOL significantly in two dimensions namely the family and school functioning. In order to achieve greater overall success,social support should be an integral part of the program and stigma on obesity should be managed and reduced by including normal-weight children in the program.</p>

Features and methods of assessing health-related quality of life and cognitive functions in patients with glial tumors

2020 ◽  
pp. 47-56
Author(s):  
Vera Arsenyeva ◽  
Boris Martynov ◽  
Gennadiy Bulyshchenko ◽  
Dmitriy Svistov ◽  
Boris Gaydar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Functions ◽  
Well Being ◽  
Health Related Quality ◽  
Number Of Patients ◽  
Related Quality ◽  
Health Related ◽  
Eortc Qlq ◽  
Patients With Epilepsy

Gliomas make up about 8 cases per 100,000 population and the number of patients with this disease is only increasing. There can be not only various types of neurological deficits among the symptoms, but also personal and emotional changes, that seriously affects the quality of life. The modern model of health care includes not only recovery of the patient’s physical functions, but also his or her psychosocial well-being. In particular, the assessment and study of the characteristics of health-related quality of life, as well as cognitive functions in patients with gliomas, is increasingly recognized as an important criterion when considering the effectiveness of treatment. To date, the features of health related quality of life and cognitive functions of patients with epilepsy and acute cerebral circulation disorders have been studied sufficiently, and, as a result, techniques have been developed that accurately assess the QOL and CF in patients with these diseases. These are QOLIE-31 and QOLIE-AD-48 questionnaires for patients with epilepsy. This is the National Institutes of Health Stroke Scale (NIHSS), Orgogozo stroke scale (OSS), World Federation of Neurological Surgeons (WFNS) scale for the clinical assessment of subarachnoid hemorrhage (SAH) for patients with acute cerebrovascular accident. At the same time, there are no generally accepted methods for assessing quality of life and neurocognitive functions that are sensitive to changes in the condition of patients with gliomas in the early postoperative period by the time of discharge from the hospital. As a result, there is no systematic information on the dynamics of the quality of life of such patients, their neurocognitive functioning. The purpose of this article was to study the literature on QOL and CF in patients affected by neurological and neurosurgical disorders for the further selection of optimal methods for assessing dynamics of the condition of patients with glial brain tumors before and after surgery. At the moment, such requirements are only partially met by the EORTC QLQ-C30 questionnaire and its application EORTC QLQ-BN20.

scholarly journals Impact of Depression and Anxiety on Dimensions of Health-Related Quality of Life in Subjects with Parkinson’s Disease Enrolled in an Association of Patients

2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychiatric Symptoms ◽  
Well Being ◽  
Depression And Anxiety ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.

scholarly journals Relationship between Sedentary Time, Physical Activity, and Health-Related Quality of Life in Spanish Children

2021 ◽  
Vol 18 (5) ◽  
pp. 2702
Author(s):  
Manuel Ávila-García ◽  
María Esojo-Rivas ◽  
Emilio Villa-González ◽  
Pablo Tercedor ◽  
Francisco Javier Huertas-Delgado
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Sedentary Time ◽  
Vigorous Physical Activity ◽  
Well Being ◽  
Self Esteem ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Higher sedentary time and lower physical activity (PA) are associated with a poor health-related quality of life (HRQoL) in children. The aims of this study were: (1) to analyze the sedentary time, objectively measured PA levels (light, moderate, vigorous, and moderate-to-vigorous physical activity (MVPA)), and HRQoL dimensions (physical well-being, emotional well-being, self-esteem, family, friends, school, and total score) in children; and (2) to examine the association between sedentary time, PA levels, and HRQoL in children separately by sex. A total of 459 children (8.4 ± 0.4 years old, 50.54% males) from 15 schools in Granada (Spain) participated in the study. A tri-axial accelerometer was used to measure PA levels in the children for 7 consecutive days. The Revidierter KINDer Lebensqualitätsfragebogen (KINDL-R) questionnaire was used to determine the children’s HRQoL dimensions. The results showed that males presented more minutes engaged in MVPA than females. Both sedentary time and PA levels were associated with self-esteem and total score (all p < 0.05). In males, moderate and vigorous PA levels were associated with higher HRQoL, whereas light PA was associated with higher HRQoL in females. Future studies should take into account the use of activities with difference intensities in order to increase HRQoL in males and females.

scholarly journals The relationship of self-reported and device-based measures of physical activity and health-related quality of life in adolescents

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Kathrin Wunsch ◽  
Claudio R. Nigg ◽  
Susanne Weyland ◽  
Darko Jekauc ◽  
Claudia Niessner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
School Environment ◽  
Protective Factor ◽  
Well Being ◽  
Health Related Quality ◽  
Psychological Well Being ◽  
Related Quality ◽  
Health Related

Abstract Background Physical activity (PA) has beneficial effects on health and health-related quality of life (HRQoL), which is a protective factor of illness and mortality. The purpose of this examination was to investigate if self-reported and device-based measures of PA were related to HRQoL in adolescents. Methods Participants (N = 1565; 54.3% female; Mage = 14.37 years, SDage = 1.99) were recruited from 167 sample points across Germany. Adolescents self-reported their PA, supplemented by a 1-week examination of device-based PA using accelerometry. Additionally, they completed the multidimensional KIDSCREEN-27 to assess HRQoL. Results Results showed that self-reported PA was correlated with overall HRQoL, Physical Well-Being, Psychological Well-Being, Social Support & Peers, and School Environment, whereas device-based PA was only correlated with Physical as well as Psychological Well-Being. Further, self-reported PA significantly predicted all facets of HRQoL except for Autonomy and Parent Relations, whereas device-based PA solely heightened the amount of explained variance in the Physical Well-Being subscale. Conclusions Findings demonstrate the importance of self-reported PA as it is related to almost all facets of HRQoL. Both measures of PA are not congruent in their relationship with HRQoL and thus implications have to be carefully considered. Future studies should investigate the direct effect of PA on HRQoL and health in a longitudinal approach to account for the causality of effects.

Quality of Life before and after Lung Transplantation in Patients with Emphysema versus other Indications

2001 ◽  
Vol 89 (3) ◽  
pp. 707-717 ◽  
Author(s):  
E. M. TenVergert ◽  
K. M. Vermeulen ◽  
A. Geertsma ◽  
P. J. van Enckevort ◽  
W. J. de Boer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lung Transplantation ◽  
Nottingham Health Profile ◽  
Well Being ◽  
Health Profile ◽  
Health Related Quality ◽  
Before And After ◽  
Related Quality ◽  
Health Related

Whether lung transplantation improves Health-related Quality of Life in patients with emphysema and other end-stage lung diseases before and after lung transplantation was examined. Berween 1992 and 1999, 23 patients with emphysema and 19 patients with other indications completed self-administered questionnaires before lung transplantation, and at 4, 7, 13, and 25 mo. after transplantation. The questionnaire included the Nottingham Health Profile, the State-Trait Anxiety Inventory, the Self-rating Depression Scale, the Index of Well-being, the self-report Karnofsky Index, and four respiratory-specific questions. Neither before nor after transplantation were significant differences found on most dimensions of Health-related Quality of Life between patients with emphysema and other indications. Before transplantation, both groups report major restrictions on the dimensions Energy and Mobility of the Nottingham Health Profile, low experienced well-being, depressive symptoms, and high dyspnea. About 4 mo. after transplantation, most Health-related Quality of Life measures improved significantly in both groups. These improvements were maintained in the following 21 mo.

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